Reinforce Your MS Diet By Connecting With Others

21st March 2013

In this post, I want to explore how connecting with other people with MS is an important part of our journey to recovery. Not only does it provide us with the emotional support that we really do need, but it helps motivate us to stay disciplined in our efforts to live a super healthy lifestyle. There is just something about connecting with others in the same situation as you that brings comfort and support. They just ‘get it’ in a way that others don’t and never will. Over the past last year, I have had the privilege of getting to know people with MS all over the world because of this site. It has truly been a wonderful experience and has really encouraged and inspiredme to stay strong and disciplined with my eating.

My Evening Out

This has been a busy week and I apologise if I have taken a while to reply your your wonderful messages. On Tuesday evening, I was so honoured to be able to attend the launch of the ‘Overcoming MS‘ UK charity. It was such an inspiring event! They served the most delicious, healthy cocktails which gave me loads of new ideas for snacks and meals. Roasted butternut cubes on skewers, little glasses of sweetcorn and vegetable chowder and chunks of roasted tuna. Yum! More importantly, I was able to connect with many other people with MS and hear their incredible stories of recovery through radically changing their diet and lifestyle. I am now more convinced than ever that the MS Diet way of life is the only way to keep symptoms at bay whilst avoiding the side effects of medication.

A Heavy Burden Shared

Each woman has a slightly different story but, at the same time, we all have so much in common. We have all faced similar challenges and had similar feelings. We understand the shock at diagnosis and we know the confusion and overwhelming despair accompanying that time. The frightening feeling of a serious relapse is understood by women in the MS community and we all know how completely out of control it feels. In addition, the unpredictability of the disease is a heavy burden to bear. We are never sure when our next attack is going to be and how badly it will affect us. By sharing these feelings, we are able to put them into perspective and after a while they don’t seem so bad anymore. We begin to feel a sparkle of hope! Especially when chatting about the difference that diet and lifestyle can make.

Connecting with others that have MS makes me feel like I am not alone in this struggle but that I have people around me cheering me on!

It is vitally important to feel that the burden you carry around each day is shared. This makes it far less heavy for you to bear.

Ways to Connect with Others

Tapping into the MS community, whether in face-to-face groups or through online forums can help you feel more empowered to take control of your illness. Lets explore some of the ways we can make this happen.

Find an uplifting support group in your area:

This is a tricky one because I have spoken to a few women who say that their experience of MS support groups has been negative. Some support groups can become moan sessions where people complain about their symptoms and how bad their lives are. It can actually be more depressing than encouraging. I agree that this is not where you should be spending your time! I have recently chatted to a lady with MS who started a support group herself. She found people in her area, in an online MS forum asked if they wanted meet up for a cup of coffee. She put the word out and named a meeting place and time. She joked that she took her mother and sister with her just in case the people that came were stalkers! One person came! Not a stalker but another person with MS looking to chat about positive steps to fighting their illness. It has now grown into a group of nine and they focus on the change in lifestyle they are trying to make. This is a good example of a group that has a positive and hope filled outlook on MS. They also hold each other accountable to stay disciplined and on track.

I was really impressed by this and feel that we all need a support group like this one. It may take a while to get going but once it is up and running you will not only be receiving the support you need but others will be benefitting from your experience.

Support from friends and family:

It’s important that you have supportive and encouragingfamily and close friends around you. These are the people that you live life with everyday and they need to know when you are going through a rough time or just need a hug.

They can also help you in practical ways such as caring for your children while you rest or by picking up a few ingredients at the store.

However, they need to KNOW that you need help. Sometimes you may feel that you want to keep your struggles to yourself and not worry or bother your family with the unpleasant details. The bottom line is that you need them and they are not going to be able to support you in the way you need them to unless you tell them what is going on with your MS. Communicate with them regularly and ask them to be involved in and help you with your lifestyle changes.

One of the great things you can do is to share your diet and lifestyle changes with them. Tell them the intricate details about exactly which foods you have chosen to avoid and the foods you are currently eating. That way, they can have you in mind when preparing meals and keep the choccies on the down low. My husband has a ‘treats bag’ that I have asked him to lock his chocolates and sweets inside. That way, they are not lying around and I am not tempted to sneak any when I am having a weak moment. Instead, I go to my treat stash which consists of dried mango, dried strawberries, dehydrated banana and Nakd bars!

Online support / social networks and forums:

There are loads of really great online MS forums you can be a part of if you don’t feel the need to connect with others face to face. You can discuss any topic you want and glean an amazing amount of information from experienced MS’ers.

Again, you need to be careful not to get involved in a chat that could discourage or pull you down. It’s great if you want to help others and encourage them through their tough times but if it starts to affect you negatively then start another, more uplifting topic.

It is so important to stay positive about our MS and not let others discourage us. Share the good news about diet and see what reactions you get! There are still many people who have no idea that a healthy lifestyle can make a difference to their MS. Please just remember not to give out any personal information such as your contact details or home address.

Summing it all up

The emotional support we receive from people, those close to us and perfect strangers, is a vital part of our recovery process. Depression is a very common symptom of MS. We need to protect ourselves against this by finding avenues of support. We are not alone on this journey and we need to take advantage of the support others can offer us. This may be in an encouraging face to face group or in a virtual online group. It may even be regular times with your family and friends to share how you are doing. Don’t ever feel that you are moaning or worrying them unnecessarily. They want to know what is going on so that they can help. They also need to know the good news about your new lifestyle and how it is making a difference. Your challenge for the week is to connect with one other new person in your position and encourage them to keep persevering. I’m sure you will receive the same support in return.

11 comments

Hi Kim,
Thanks so much for accepting me to join you and many others on your journey.
I was diagnosed with MS in December 2010. I have a lovely supporting partner who helps lots and lots where he can. Especially as having 2 very active children. I am a very lucky lady!! he is actually training for the Brighton marathon at the moment an the MS Society is his sponsored charity which is spurring him on to keep at it. I am very proud of him.
I have recently had to give up my career as a hairdresser due to my symptoms. I as still very active and lead a busy life taking care of my lovely girls and most importantly, myself.
Like yourself I read lots about MS and diet and have put Into practice all that I’ve learnt. We had an all inclusive holiday last year and ate lots I shouldn’t and kind of lost my way a little with the diet.
Reading your page has inspired me to get back to it!!!
I have experimented lots with food that I might not have ever tried before and it’s been quite interesting. We had a trip to Australia to visit my sister in law lat year and I am now a lover of sea food, although seafood here in the UK is not as tasty as in Australia.
I found this recipe great for snacks throughout the day. Snacking on nuts and seeds gets abut boring when you have been eating them for what feels like forever!! I have experimented with different nuts/dried fruits. They are delicious!

50g each of dates, dried apricots, sunflowers seeds
100g raisins
100g porridge oats
30g wheatgerm
25g medium oatmeal
20g linseeds
Juice and grated zest of 1 unwaxed lemon
1 tablespoon honey, preferably local
2 tablespoons cold-pressed flax or rapeseed oil, plus a drizzle to grease the tin
Whizz all the ingredients in a food processor until it forms a firm dough ball. Lightly oil a 20cm loaf tin or one end of a rectangular baking dish. Press the dough into the pan to a thickness of about 2cm. Chill in the fridge for about an hour. Cut into cubes or sticks and enjoy! For a variation, try the juice and zest of an orange instead of lemon

Thank you so much for this wonderful comment and recipe Sam! I have been looking for something like this for a while, so thank you very much! I am very happy to hear you are back into things now, keep going! <3 Kim

I remember a time not too long ago I would’ve never considered participating in any run/walk. Now I’m registered for and excited about an 8k run/ walk. The funny thing is I didn’t know the distance before I registered ( hahaha)!
It doesn’t matter anyway I’m stepping out on Faith and I’m going to complete the race!! Remember through Faith all things are possible so these 5miles are completed and if The Lord says the same I’m off to the next challenge :-)!
It’s time to crank up my motor (spirit) and do something I’ve never done to accomplish something I want, so I’m challenging myself to a duel! In the right corner is the New Me vs. in the left corner Old Faithful…. I’m cheering for the New Me ;she’s new and improved, ready fight herself if necessary, and has Faith she will never fail!! Old faithful doesn’t stand chance!! It’s time out for talk I’m all about action!
Lets face it you can’t lead a team called Victorious if you’re not willing to get a little dirty and sweaty 🙂 I’m ready to be Victorious from start to finish! I don’t have to be #1. I’ve already won because I’m trying!! By the way for the first time in over two years I’m under 300lbs.!!! This is only the beginning!!! I feel great, am eating well, living well, and exercising!!!

Well done to you! I can hear that you are super motivated to stay healthy and not let this illness get you down! I am so happy that you are in such a good place and are eating and exercising well. Makes such a huge difference when we can live like this. You are very encouraging to the rest of us. We will hopefully all be inspired to follow your example! Keep going! Kim

Anyone know how to combat neuropathy in th toes and feet other than gabapentin and baclofen. The dr wants me to go on cymbalta. I refuse heard bad from alot of people. I they also gave me ativan for bedtime. Don’t like to take it. Just started gilenya a week ago. Also have tortorus hot flashes at 49 yrs old. Can’t have soy on m.s. diet what do u suggest. Need remedy for feet can’t get sleep w sheets or blanket on feet.

Hi Susie! I do know of the Wahls Protocol. Yes there are a lot of similarities but I don’t recommend meat and organ meat because of the saturated fat and animal protein. I do love that she advises a high amount of fruit and veg everyday. How are you doing with your diet?